Dercums Disease

Overview:

Disproportionate weight gain and localized chronic pain (which lasts for more than 3 months).  Any weight gain accumulates in distinctive pattern i.e. Thighs, upper arms, distinct shape on the stomach and or buttocks.

Surprisingly weight gain does not normally show in the hands and face and sometimes the back can be spared.  Although it can happen this is very rare. 

Dercums is classed as one of the rarest diseases in the world.

Symptoms:

• Rapid weight gain
• Chronic pain for more than 3 months
• Swelling in upper arms, stomach and thighs.
• Lapses of memory.
• Chronic fatigue.
• Lipomas (benign) which are painful and tender especially during their initial formation.
• Disproportionate limbs.

Other Symptoms:

• Migraines.
• Neck headaches.
• Compression of the median nerve.
• IBS
• Tietzes Syndrome.
• Fibromyalgia.
• Sensitive to cold.

Treatments.

There is no know treatment for this disease.  Currently there are clinical trials in liposuction which can improve the patients pain but the fatty tissue removed can come back. 

Pain medication is the only offered treatment as present.

My Dercums:

I call this my pain in my muscles and can vary day to day.  Some days the legs will be extremely painful and then the next pain will be in my arms.  Unfortunately, diet and exercised do not work in controlling the weight gain.  The best way to view this is adapt and still try to do as much as I can.  I have tried many complementary treatments with some success in managing the pain. I have noticed that any exercise increases the swelling either immediately after or by the next day.  I have also suffered Tietzes Syndrome which the pain is so bad you can’t move (this causes pain in the chest wall).  The first time I suffered this I thought it was a heart attack.  At the time, we did not know why I suffered Tietzes but now this all makes sense. Finding a balance for this disease is extremely hard.  Coming to terms with the way my body has changed has been difficult. I have gone from being sporty and fit to not being able to do much.  I can feel multiple Lipomas and have a buffalo hump on my back.  Personally, I do struggle with the way my body has changed but I do not dwell on this as there is little I can do.